Hello everyone,

I am new to the forum. I injured my shoulder in July 2011 and finally had surgery on it in February. Three months following my surgery I was diagnoised with RSD. The RSD has moved from my shoulder down to my hand. I also believe it has moved towards my neck. As of Thursday I had my first nerve block. I have attended PT throughout my recovery and continue to do PT three times a day at home. I taking prevenative medicaine for chronic migraines already. They currently have me taking Gabapentin, Norco, Mortin, Lunesta, Cymbalta but this is not managing my pain level well. I was hoping to get some suggestions from the group of what seems to work well with them. My care has been turned over to a Pain Management Clinic. Attached are some pictures of the affected limb. Thanks for your support and advice.

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Welcome to Neruo Talk. I am sorry to learn of your RSD. I am in the same sinking boat too. Glad you found this forum. You will meet so many nice people who may be able to help you find some more help... I went to a kind of doctor I never heard of before, a physiasist. She is a pain specialist, with this other additional education. I was prescribed this lotion, that does hurt to rub in because of the RSD, but it helps. It is made from a mix at a special pharmacy. Maybe ask your pain specialist about it....Ketamine/clonid/ Gabp/./IMIPR/Mefen. Doesn't smell, but like I said rubbing it into skin that already hurts isn't so much fun, but afterthis I get some good relief. In fact more than a narcotic. I have been allowed a narcotic, but don't have to take them with this lotion as much. YEH!!!!!! I also didn't wear my shoe in church, but they didn't care....I do wish you all the best, and I hope the pain is less for you with each day. ginnie

Hi all! My name is Tara and I'm new to all of the RSD stuff. I'm a married 35 year old homeschooling mother of two children (ages 12 and 5 1/2). My 12 year old is also has a chronic kidney disease and has had two kidney transplants and will be having another sometime in the next year or so. My husband works a high stress job, so some of that is passed on to me... I know how much they say to keep stress to a minimum, but with my life, it was hard enough just to deal before the RSD diagnosis... It's even harder now.

I had a slip and fall back in March 23, 2012. I was first diagnosed with a severe sprain and strain. I was told that I should expect to still have pain for quite a while.

Four months later, I was still using a supportive brace, had some problems with temperature, pain, swelling and discoloration. I returned back to the orthopedic doctor, who noticed the color change and temperature difference. He referred me to a neurologist.

I saw the neurologist last week and I had a nerve conduction study and EMG. He was testing for both tarsal tunnel syndrome and secondarily for RSD. They were optimistic that it was tarsal tunnel.

Unfortunately, I have been diagnosed with RSD. I have pain in my foot, ankle and leg. My temperature difference from one foot to the other is six degrees Fahrenheit.

I'm awaiting my appointment back with my orthopedic doctor.

I'm currently taking Cymbalta (30mg), Lortab (7.5mg), and Flexeril. I also take Aleve each night to aid in my pain relief for sleep.

I'm new to the whole thing, so I'd love to meet some others who have been dealing with this. I know RSD affects each of us differently, but to know that there is someone else out there like me is reassuring.

(((hugs)))

Sorry hun I live in Kentucky. No support here either. I have had it almost 4 years and still drs look and say what does that stand for. Feeling your pain.

I am new here. Have been diagnosed 3 1/2 years. Kinda tired of doctors hospitals and being in bed. Need all new friends now none of the well ones come around or call anymore. Cheers

Tara,
Its the people that are suppose to know whats going on with you that don't that is more frustrating than anything. But you are gonna be strong enough to deal with them. I am 37 and have 3 grown children that have started taking care of me, so my hubby can work. Just keep praying. And I will pray for all of your family.]

Hi Tara and welcome. I have a very similar story to yours. My injury was in April/May of last year. Husband in a very stressful situation which resulted in me worrying about his health. I hurt my foot and was in a boot for 3 month. My orthopedic surgeon diagnosed my crps and sent me to a pain anesthesiologist. I had 2 sympathetic nerve blocks that were minimally if at all successful.

What has helped is my medications, getting enough rest- which lately has been difficult- aquatherapy, seeing the appropriate doctors (some were bad, some were good). Have the right doctors is SO important. I travel 2-1/2 hrs. to see a doctor who specializes in crps. His office sees 4-5 crps patients a day and they come from all over the country.

It sounds like you're at the beginning of this journey. You've been diagnosed rather quickly which helps your odds of remission. There is a lot of information here. I have tried to read it all and pick out what could possibly help me. Read as much as you can about this disease. It will help you.

Again, welcome.

Hello Tcoop. So sorry to hear you must deal with RSD at a young age and with kids. I am older, so my responsibilities are less. My foot too began with injury, then two surgeries for ganglion cysts. At first they though PN, then RSD. I am new to it too. Only about 6 months. I do understand the pain of it and what you must feel trying to do all the right things by your children. I went to a new kind of doctor I had never heard of before seeking more pain relief. She is a pain specialist AND a physiasist. Most on this site had to look up this kind of physician too, and never heard of it. She deals with the whole body, not just the pain. I have a rub on that works good. Can't say it feels good rubbing the stuff in for 1-2 minutes, but the relief after is good.
It is mixed by a lab. Ketamine/clonid./GABP/ .ImiPR/ Mefen. I was skeptical, as I do take some narcotics. This really helps me. I do wish you all the best as you try to go forward. I hope you have less pain today. ginnie

Hello, I only found this forum today but skimming through it I already feel welcome. I had a partial amputation injury as a child to my ankle foot and leg and have wrestled with mobility and pain management on my own ever since (close to 30 yrs). I had never heard of crps until a few days ago. Looking back I believe I have often struggled hard enough to maintain the ability to walk and hide any limp that it was put into remission. As my frequent stumbles have increased their surprise attacks on me and have managed to make themselves become falls I've gotten very scared that I can not improve my leg alone. I do not have a crps diagnosis other than knowing the pain I have felt has only been described accurately by crps sufferers. Anyway thanks for reading hope people are doing well today best of luck in your efforts!

Welcome to the forum. Sounds like you have been through years of pain and suffering. Mobility is always a struggle. I to have ankle and foot crps. Now in both feet.

Please feel free to post responses, rant, rave, or whatever you feel and welcome.